News and Information
A Message from your Chapter Coordinator
Happy Fall! With the changing of the leaves I am reminded of all of the equally wonderful and exciting changes that have taken place for the New Jersey Chapter over this past year. It has been my goal since assuming the role of New Jersey Chapter Coordinator to revitalize our Chapter, bringing forth more opportunities for education, networking and of course the all important fundraising! As we all know, change is sometimes hard to effectuate, and certainly does not occur overnight, but WOW has our Chapter made fantastic strides!
A HUGE “thank you” goes our to Mark Kaufman, a longtime and ultra devoted Chapter member who has just recently accepted the position of Educational Coordinator for our Chapter. For those of you who know Mark (and for those of your who don’t), he is a tremendous resource for so many of our Chapter members. A PKD patient himself, who spent time on dialysis before receiving his kidney transplant, Mark is a fantastic resource for PKD patients, and families, no matter what stage they are in in terms of their PKD diagnosis. This year, Mark coordinated a wonderful educational event in the Spring of 2015, with two (2) physicians from Robert Wood Johnson. The event was a tremendous success and a wonderful educational and networking opportunity. If you have ideas for an educational event for the Chapter, or would like the opportunity to speak with someone who as run the gamut from diagnosis with PKD to transplant, Mark encourages Chapter members to reach out to him via e-mail at firstname.lastname@example.org
Wondering what you can do throughout the year to raise awareness, and funds for PKD? Think about a DIY (Do It Yourself) event! Casey Prakapas has mastered the art of the DIY as demonstrated by the success of the Chapter’s 2nd Annual Bar Hop to Stop PKD which took place in June in Hoboken and which raised thousands of dollars for the Foundation. So what can you do? Aside from joining us for next year’s Bar Hop, think about a garage sale with the proceeds benefitting the Foundation, or maybe a spaghetti dinner! I am happy to discuss thoughts, ideas and options, so please do not hesitate to reach out to me at
With the holiday season almost upon us, another great way to raise money for the Foundation is to do your holiday shopping (and in fact your everyday shopping) on AmazonSmile. Instead of using your Amazon.com login, login and shop through AmazonSmile.com where Amazon will donate 0.5% of the purchase price of your goods to the PKD Foundation. Simply select the PKD Foundation as your charity of choice, and you can help support the Foundation’s mission to find treatments and a cure for PKD simply by shopping!
Another BIG thanks to Stacey McClain, our New Jersey Chapter Walk Coordinator. Stacey has once again made our Walk a success this year and we could not do it without all of her efforts and hard work. Stacey is always looking for new ideas and volunteers for our Walk. If you would like to take part in next year’s Walk, please contact Stacey at email@example.com for more information!
I am hopeful that 2016 will bring increased awareness for PKD, and that our Chapter will continue to grow and thrive. If you have ideas for education, fundraising, or any efforts I can make to grow our Chapter, increase our presence in the community and the like, I encourage you to reach out.
With much gratitude…
PKD Patient Handbook
The newly updated PKD handbook is now available! The revised handbook has undergone extensive reviews and updating by PKD experts. Topics include PKD signs and symptoms, diet and nutrition, kidney failure, transplantation and more.
Download your digital copy today!
The REPRISE clincial research study will evaluate the safety and efficacy of tolvaptan in participants with late stage 2 to early stage 4 chronic kidney disease (CKD) caused by autosomal dominany polycystic kidney disease (ADPKD).
For more information go to: www.RepriseStudy.com or check out the Study Factsheet.
For questions regarding the study please contact the Research Manager, Steph Hanzl, R.N., CCRP at firstname.lastname@example.org or 610.433.4100 ext. 490.
Local Events and Meetings
Chapter meetings provide an opportunity for you to have your questions and concerns about PKD addressed. We will do our best to provide you with answers or direct you to someone that can assist you. Everyone is welcome!
If you have questions about our Chapter meetings, please email our Volunteer Chapter Coordinator, Alex at email@example.com.
New Jersey Walk for PKD
Thank you to all who joined us for the 2015 New Jersey Walk for PKD!
We had a great time connecting with everyone. Check out some of our favorite memories from the 2015 New Jersey Walk for PKD!
Check back for more information on the 2016 New Jersey Walk for PKD! If you are interested in helping with the New Jersey Walk for PKD, email Stacey at firstname.lastname@example.org
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Next Webinar Wednesday
Wednesday, Jan. 20, 12 - 1 p.m. CST
David will breakdown a published scientific journal article to explain it in simple, straightforward terms. He will discuss an article by K. J. Kelly, et al. in PLOS ONE titled: Improved structure and function in autosomal recessive polycystic rat kidneys with renal tubular cell therapy.
Latest National Webinar
Presented by: David Baron, Ph.D., PKD Foundation CSO
Why does a drug therapy take so long to find? Hear from PKD Foundation Chief Scientific Officer David Baron, Ph.D. as he uses his decades of experience in drug development to explain the process as it relates to PKD.
Watch previous webinars here.
PKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.